“You have so much energy!”
Do you mean I have a quite the joie de vivre? Do you mean I seem to have a bunch of disparate hobbies/projects on the go at once? Or do you just mean I talk a lot?
You see a slice of me. At work, in uni classes or at social events, you see the me I present to the world. I have combined-type ADHD with primarily hyperactive tendencies. I am ever-chasing the dopamine high to make up for my brain’s faulty receptors. I’ll be the first to try something new, the one who is deeply involved in the throng of conversation and whatever is happening around me. I feel a genuine a rush from learning and listening to other people. My thoughts race and splinter a million times a minute so I always have something to say.
However, ADHD isn’t all having lots of ideas and connections and being able to sustain a conversation with absolutely anyone – I have a few wee things known as ‘stims’ – repetitive behaviours that are comforting. I sniff, over and over again. I bite my lips in little strips – a never-ending project. I usually have a hairband on my wrist – not for putting hair up but for fiddling with. I jog my legs, I stroke my hair, I crack my fingers, shoulders and back, to name a few… These, as well as the tendency to interrupt in conversations, generally aren’t socially accepted. I learned about ‘masking’ only once I was diagnosed last year – where we don’t move or make noises in the way we desire to so that we can fit in. And to be fair, we all should try and be considerate of others in our actions!
But this adds up spending tremendous amounts of energy in a day. If I don’t think about trying to calm down some of my hyperactivity over the course of the day I expend all my energy very quickly. If you were to meet me in person, you probably wouldn’t believe that I spend a significant proportion of my life in my bed. I’m an energetic talkative excitable and very, very sociable one. But my ADHD means that I can be very hyperactive one moment… and then crash the next. Social situations, as thrilling as they are, are exhausting because of the need to hold in my stims and thoughts.
I also had cancer between the ages of 11 and 16 which, as you can imagine, caused serious fatigue amongst other side-effects. On top of that, I broke my back at the time (how they discovered the cancer) and my muscles wasted whilst I healed – I had to learn to walk again. Yet, I used to expect myself to do what I always did, and then be disappointed in myself when I literally couldn’t move anymore, suddenly, partway through the day. I’d go to pick something up or add something in a conversation and I just couldn’t. The clothing I wore was severely dependent on my mobility and energy as well. Some days, my limbs just seemed to weigh more. I once collapsed trying to open a heavy door at school. This is just my experience though – there are, according to the UK Government, over 11 million people living with a ‘limiting long term illness, impairment or disability’ in this country.
Perhaps you’ve heard of spoon theory – everyone begins the day with a fresh set of spoons and each one equals an amount of energy that can be spent. You face the day ahead calculating how many spoons each activity will take. Once you’ve used up your spoons, that’s it, you can’t do anything more. And not everyone is given the same amount of spoons.
Energy management is a huge part of living with chronic illness and disability. Without taking it into consideration, it can lead to worsening of symptoms and pain, as well as missing out on stuff you actually want to do. With more events online, this gives more spoons for the use of other activities.
No spoon spent navigating public transport (which may not be fully accessible) and travelling, no spoon spent getting ready, no spoon spent masking in social situations, no spoon spent pretending you are well and fine, and so on.
It started early on in the pandemic and increased throughout – seeing people lying down on a bed or sofa whilst they enjoyed an online event or workshop. I nearly cried the first time I saw it. It removed the judgement away for me, my inner critic. I could plan my day differently. I could appear lying down in double-chinned glory, perhaps even with my quilt up around me, as I spent a lot of my evenings anyway; I no longer have to sit up and pretend I am full of energy. I’ve seen more and more people appearing in their dressing gowns even! I think it also dovetails nicely with our change in expectations of what ‘professional’ is or what it means to present as feminine.
This pandemic has caused reflection in us all. Accessibility has been an issue at the heart of working from home and the pivot to online – we can adapt society to be more inclusive and accessible, even in small ways, and we can alter our expectations of how we present ourselves to the world based on our own needs.
Image courtesy of Annie Spratt.